What are Epidermolysis Bullosa?
Inherited epidermolysis bullosa (EB) encompasses a number of genetic disorders characterized by structural skin fragility and mucosal abnormalities, particularly following trauma. Facing this disease few non-profit organisations go to actions.
THERAPEUTICS IN DERMATOLOGY
Therapeutics in Dermatology proposes to Healthcare providers an article about:
- the assessment of psychological and physical impact,
- the information for families
- the management strategy and disease monitoring
- therapeutics strategies
- daily lives of children with epidermolyisis bullosa
DEBRA International, the worldwide network of national groups working on behalf of those affected by the genetic skin blistering condition epidermolysis bullosa (EB) proposes to healthcare providers guidelines in different field including:
oral care (to learn more, click here)
wound care (to learn more, click here)
pain management (to learn more, click here)
This international patient association have support groups for patients with epidermolysis bullosa are active in more than 50 countries. To find a support group near you, please visit the Debra International website.
Orphanet provides also anaesthesia recommendations (to learn more, click here).
The website Geneskin contains a list of clinical centers, clinical trials and a directory of patient associations.
EB-CLINET is a clinical network of EB centres and experts, which aims at establishing EB centres worldwide to improve medical care for people with EB through exchange of knowledge and experience about EB and, by providing a basis for clinical trials, to accelerate the way to a cure for this disease.
Ichthyosis Awareness Month 2019 : more than ever needed